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Augmentative Communication Interview With Robin Hurd

The Autism Life.com presents an interview with Robin Hurd, a parent of four children and a Parent Support Liaison with the AAC Institute. Robin is known internationally for her dedication to augmentative communication and to her family.

Alicia: Robin, tell us a little about yourself and your family. Can you describe you and your family’s experience with augmentative communication?

Robin: I have 4 sons, ages 14, 11 and twins age 9 years. My youngest 2 have physical disabilities that prevent them from speaking more than a few words, and they use a voice-output system to communicate, along with some sign language that the family understands. My middle son has PDD-NOS, which presents itself similarly to Asperger’s syndrome: many of the same sensory, motor planning and social issues other parents whose child has an autistic spectrum disorder face, even though he is verbal. We began to pursue getting the twins a communication device after they started to invent their own sign language and teach it to the rest of the family. Though we tried to teach them standard signs, their motor skills are not good enough to do many standards signs. Getting a communication system that allowed the boys to choose their own words and begin to put them together to tell us things was an amazing step for our family. Immediately, the biting we had been struggling with stopped. Within the first week, Caleb found out how to call his older brother a name (fat pig!), and for the first time was able to be a part of normal sibling teasing. Though it hasn’t been smooth sailing, having a way to communicate has made a big difference on the whole dynamics of the family. The twins can tell us, instead of crying, when they want something. They can be “in charge” of a family charades night or a family music night (all the boys are musical). They can use their communication system to write stories on the computer, either alone or with all their brothers standing around helping to make it fun.

Alicia: Most readers are fairly unfamiliar with the concept of augmentative communication, let alone familiar with all the different types of devices that are available. Could you please take a moment to describe the type of devices that your children use and what makes them unique?

Robin: Augmentative communication is anything that can help a person to communicate, who doesn’t speak. It may be sign language, a picture exchange system, a talking photo album or a “talking computer”- a high tech voice output system. Josh and Caleb use a high tech voice output system with software that allows them to choose their words by choosing a sequence of picture symbols (called icons) that represent the idea of the word they want to say. For example, the “apple” icon represents things to do with eating. They can choose to say eat hungry, food, or a specific food once they select the “apple” icon. This software system is called Minspeak, and focuses on teaching the high frequency words that people need to build sentences. Even though the boys were not able to read, they could use this device at age 4 because it uses symbols, not words. Josh and Caleb’s communication systems (called a Pathfinder and made by Prentke Romich Company) also have one other feature that is unique and which helps the boys: The vast majority of the device never changes. Both boys have trouble focusing, and the static display (area that stays the same) decreases distractions for them.

There are many options to consider when looking at voice output AAC systems and many questions to ask yourself. Do you want your child to rely mostly on complete sentences stored in the device, or do you want to work on building communication word by word? Can the child read yet, or will they be able to soon? Is your child able to speak in some environments, a little bit, or not at all? Does this device allow at least 5 years of “grow room”? (Most insurances cover a device only every 5 years.) Looking at as many options as you can, either through demos, on-line, or by actually having the device in your hand will help you be an educated consumer who can ask questions of your child’s speech therapist and be active in finding a solution that is right for your child.

Alicia: Although Caleb and Josh have very different diagnoses than what this website deals with, I find your knowledge and experience teaching your sons language too great to pass up. You’ve talked before about the fact that people often don’t look at AAC as a way to learn language yet it is undeniable that my son uses his device in this fashion. I’ve always thought about my son and his device in this manner, partly because he does have natural speech abilities and has learned not only to communicate but to learn language as a whole through his device. I know from previous conversations with you that when talking about language development and using augmentative communication you’ve referenced the book, Seeing Voices by Oliver Sacks. Could you explain a little bit about this connection and why you think it’s important?

Robin: First of all, sign language IS a form of AAC, so much of what Oliver Sacks says about children who sign can apply to our children. Even though children like ours can hear, being unable to practice using words to communicate can cause some of the same language delays that are seen in children who can neither hear nor communicate, though thankfully to a lesser degree. Any time a child can’t interact with the world outside for an extended period of time, language delays occur. When children also have internal processing differences, learning about words becomes even more difficult. We understand words in 2 ways: as chunks of sound and as ideas. Children who are hyperlexic (can sound out new words and read early, but don’t understand the meaning of what they read) and children who think in pictures and have trouble translating their thoughts into words are the opposite ends of the spectrum of language. Our job is to guide our children to a place closer to the middle, where they can understand both ways of looking at words.

Alicia: I remember you making the point one time that one of the biggest misconceptions about augmentative communication is that so much time needs to be spent teaching kids where words are on a device. Rather, you mentioned that while it is important that a child know where words are on a device, it’s far more important to know how to communicate meaning using words. How do we achieve this as parents, caregivers, teachers, and others?

Robin: Any time we are teaching AAC to kids, we need to do it in a setting where those words would actually be used. For example, we can teach colors on flash cards, but the child may never transfer what he knows about flash cards to crayons, m&m’s, toy cars, or clothes. If we teach the colors in natural settings-when making a picture, eating m&m’s and playing with cars—the child makes the connections automatically. Similarly, teaching a child how to locate the words, “I want juice” is pointless unless he is thirsty and is really going to get some juice! Otherwise, they are devoid of meaning.

If we want a child to learn words to explain feelings, the best time to do that is when the child is having some strong feelings, or is faced with a situation where someone else is having strong feelings. For example, in Disney’s sleeping beauty video, the bad fairy gets so angry she rises up to her full height and turns into a dragon (and my son Joshua is fascinated!). Here is a perfect chance to talk about what the name of that feeling is called. Josh knew that he sometimes feels like that character (when his brother takes his toy, for example), but he had to learn what the name of that feeling is, in order to begin to do anything about his behavior. “You are angry, but we don’t hit others when we are angry” is meaningless unless the connections between the feeling and the word have happened first.

Alicia: I noticed in some of the conversations on the Google Group AAC Parents that you too, believe in the power of the teachable moment. What’s the best way to integrate the teachable moment into augmentative communication strategies?

Robin: When the boys were in pre-school, I set up certain times of day (usually around a meal or snack) that were our talking times. Often, I had a book picked out, and knew what words that related to the book I wanted to focus on. I then showed the boys the word and read the story, stopping to ask questions or to talk about the key word (even if I had to say it on their AAC system myself.) Sometimes our talking time was eating jelly bellies and talking about colors or numbers. For the rest of the day, any time I had the chance to reinforce that word, I did so, reminding the boys about our talking time and how it related to what was happening now.

I also use guesswork when the boys are trying to tell me something, and can’t seem to express it as well as they would like. I guess the word I think they want, ask them if that word would help them. If the answer is “yes”, I show them how to find it on their AAC system. If it’s not there, we may program it in right then and there!

Alicia: You’ve mentioned that one of your children has an Autism Spectrum Disorder. Although your son with an ASD did not have any speech problems, I’m wondering, with your AAC experience and knowing what you do about Autism Spectrum Disorders, what kind of advice would you give to parents raising a young child with Autism and who are also considering AAC?

Robin: Don’t use AAC as a last resort. An amazing thing we discovered was that our verbal child with ASD was better able to communicate his feelings at first using either photos of different feelings or his brothers’ AAC systems! Eventually, he was able to say the words at the time he felt the feelings, but in the heat of the moment, using a speech alternative allowed him and us to understand what was going on inside him when he got upset. Many children with autism do really well with pictures, and some don’t. Find out what helps your child the most, and use it.

I am continually amazed at how hard it is to work with a child whose disability is invisible to the rest of the world. My sons in wheelchairs are obviously different from other kids, but my son who can walk and talk “looks so normal”. When we go places, and he has a sensory overload and either does something “strange”—like jumping up and down on the front row of bleachers at the football game with food all over his shirt---or just plain melts down in public, people don’t understand. Though we have gotten considerably better at reading the warning signs of approaching overload, and he has gotten better at knowing he needs to get into a quiet place NOW, even the fact that he can speak doesn’t mean that he can fully communicate at all times.

Alicia: Getting a child to meaningfully communicate with a device can take time. What suggestions do you have for parents and teachers who are frustrated with that process or who have hit some communication roadblocks?

Robin: First of all, make sure you are providing plenty of chances for the child to explore the device. Playing with it, hitting buttons and seeing what happens is a part of learning to use AAC. Often, children with autism are discouraged from playing with the device (don’t want them to self-stim on it) to the point that they don’t get to find out enough about how it works. The key thing to remember is to be near enough that you can respond to anything that seems to need a response. If the child says “how are you?” on the system, you respond with “I’m fine, how are you?” If the child says “drink”, you offer a drink. If the child mentions a toy, you get out that toy.

Secondly, make sure you are teaching words in a setting that it makes sense to use them in. Stay away from flash cards and focus on using those words in a real setting to make something real happen.

Thirdly, remember that helping a child to learn to use AAC is hard work! Your child is working hard to learn to communicate with you, but you are also working hard to understand your child’s sometimes confusing early communications, and to think about what to ask your child to communicate next. Don’t beat up on yourself for the times where you simply didn’t have the energy to do everything. Any child who needs an alternative to speech also has many other needs that take time and energy from the parents and caregivers. Sometimes, we just have to deal with the most pressing issue at that moment, and let the others go. Provide access to communication and lots of modeling whenever you can, but don’t expect it all to happen instantly.

Alicia: As you can tell The Autism Life.com is geared for young children. What kind of advice would you give to a family that is considering a device for a young child or maybe already has one? Are there specific strategies that come to mind when working with young kids and AAC? How about using AAC in the preschool setting?

Robin: I am going to share some snippets out of a book I am working on, Beyond Flash Cards, about just this topic. As I mention in this excerpt, parents often have different goals for the AAC system than teachers do. We often focus on knowing what the child wants, what hurts and helping to manage behavior outbursts. Schools have different priorities. Here’s a brief excerpt from the book:

Shape and color identification seems to be the “gold standards” for young children in a school setting. If the child can identify these things, all is well. If not, the child is not successful. For many parents of children who use augmentative and alternative communication (AAC), our big concerns with communication tend to be very pragmatic: tell me what hurts, what you want to eat, what you want to do, and so on. Since parents’ time is so stretched by having a special needs child, many children are not working on the “gold standards” at home as much as normally developing children. Parents’ priorities are simply different.

Oftentimes, the solution that is offered for children who do not know these things is flash cards. But flash cards only work on rote memory. They do not help children understand the concepts behind what they are expected to learn. A child may recognize “blue” on a flashcard, but not be able to transfer the idea of “blue” to his jeans, a toy truck, or the color of her eyes. If “blue” means nothing more than the name of that particular flash card, we have not succeeded in teaching the child the concept, even if we can check off an IEP goal because he always calls that flashcard “blue”.

When working with children who are learning to talk with AAC, choose a variety of activities. Some should be exploratory in nature (no right and wrong answer is needed to learn something about the word being taught), like a child’s first experiences with these concepts normally are. Some should be book based, to encourage literacy and fun with stories. Some can be food based, because children need to explore with all of their senses. But always include the concepts behind the skills, as well as a way to tie those concepts in to information that the child already knows.

Alicia: How do you feel about using as many forms of augmentative communication as possible (signs, symbols, paper and pencil, etc…) even if a child has a device? What’s your advice regarding multi-modal communication strategies for families with young children.

Robin: Almost everyone who uses AAC will have multiple ways of communicating. However, it is important to work hardest on the way of communicating that is most easily understood by others who don’t know the child well: generally this is the AAC system. Whenever I talk to people who use AAC about their advice for parents, this is what they say. Saying, “I understand his signs, so I really don’t need AAC at home” does not help your child develop independence or the knowledge that he or she has the ability to communicate with others outside of the family. Having said that, managing sensory overload can be a huge struggle, and the ways of communicating that may work when the child is relaxed and calm simply may not be possible in these “sensory” moments. Having ANY way of communicating that the child is nearing meltdown is more important than trying to make that a learning moment. Do what works best!

Alicia: Where do you think the direction of AAC will go in the future for both children and adults?

Robin: I hope that active, involved parents who are pushing for their non-verbal children to have AAC and use it regularly everywhere they go will have a big impact on how children with AAC are taught. There is research out there that shows ways to teach children with language disorders to improve their language skills and their test scores, but what the research finds effective has not yet become common teaching practice. Part of what I do with the AAC Institute involves providing both teachers and parents with information on effective teaching strategies that work for ALL children, including those with language delays and/or AAC systems.

One of my big dreams is that educators would stop lumping children who use AAC in a special category, as if they should be taught so differently from other children that the teachers just can’t do it! Many walking, talking children have language delays, and can be helped by the same strategies that help our kids. What I do with the AAC Institute will hopefully help to change this perception. My title with the AAC Institute is Parent Support Liaison. When parents contact the AAC Institute for information or help, I am the voice at the other end of the phone or the person at the other end of the e-mail. I provide information, direction and often a listening ear. As part of this parent support, I write a monthly column to address some of the questions parents have or some of the information they may need to pass on to their child’s school.

I also spend some time presenting at conferences, speaking to both parents and speech professionals, as well as classroom teachers who are now trying to learn how to fully include children with language delays in their classrooms. In addition, I write a monthly column for NASA’s Southeast Regional Clearinghouse, which targets science and math teachers, but may also be useful to parents of school age students. This column, Access Science, can be viewed at http://serch.cofc.edu/special/accessscience.htm . While not rocket science (pun intended), this column does focus on teaching special needs children from the perspective of equal partners in learning, not a classmate to “be helped because they are ‘disabled’ ”. I try to offer teachers not just a perspective, but simple examples of small changes in teaching style that result in big gains in perspective of everyone in the classroom.

Eventually, just as people in wheelchairs have become more visible in advertising and media, I think that people who don’t communicate verbally but have plenty to say will being to become more visible. This will help others to being to understand what we already know to be true: people who can’t speak are much more like the rest of us than they are different. All of us have hopes and dreams, likes and dislikes, skills and things we struggle to do.

We here at The Autism Life.com would like to express our deepest thanks to Robin for taking the time to do this interview and to help parents understand more about augmentative communication, language, and autism. If you’d like to know more about Robin and her work visit the AAC Institute and visit the Parent’s Corner, a monthly article Robin writes that helps parents understand more about augmentative communication and what parents can do to learn more and to help their children use and integrate augmentative communication into everyday life. Also, visit Robin’s website at www.aaccoreconcepts.com to learn more about her book, Beyond Flash Cards. For more information on the type of device that Robin's twin boys use, the Pathfinder, go to the Prentke Romich webiste link here.

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